With Loretta Byrne, ResearchMatch and Danielle Griffin, University of Houston
“Up to 75 percent of Pacific Islanders are unable to convert an antiplatelet drug into its active form and therefore are at higher risk for adverse outcomes following angioplasty,” said the University of California San Francisco Participant Recruitment website. “And if the study population had not included diverse participants, this difference would not have been discovered.”
Diversifying your human subjects for studies is essential for good research.
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“Diversity and inclusion of all people in research is essential, yet the vast majority of people are unaware of research opportunities,” said Loretta Byrne, RN, MSN, CCRP national project manager for ResearchMatch, a nonprofit funded by the NIH. ResearchMatch helps to set volunteers up with researchers working on all types of studies that require human subjects. “This nonprofit provides a space for the community to essentially raise their hands and say, ‘I’d like to know more.’”
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UC San Francisco, a champion for diversity, held a Recruitment of Underrepresented Study Populations webinar which gave practical advice to researchers well, searching, for human subjects for trials. Nynikka Palmer, DrPH, MPH, Assistant Professor, UCSF School of Medicine, and Esteban Burchard, MD, MPH Professor, UCSF School of Pharmacy went on to urge researchers thusly:
“Participants in research should reflect the diversity of our culture and conditions, taking into account race, ethnicity, gender, age, etc. The lack of diversity among research participants has serious ethical and research consequences.”
What types of consequences could be incurred from failing to test a representative sample? “It impedes our ability to generalize study results, make medical advancements of effective therapies and it prevents some populations from experiencing the benefits of research innovations and receipt of high-quality care,” explained the authors.
Danielle Griffin, Ed.D., CIP, associate director of Institutional Review Boards (IRB) in the Office of Research Integrity and Oversight at the University of Houston, is concerned with researchers’ behavior when they do garner volunteers. “Researchers need to go to where people are,” and instead of just collecting data, “they must establish relationships. Trust is an important aspect of why people decide to participate in studies.”
Trust may be difficult to establish in some cases and with some prospective demographics. It would be remiss to not acknowledge historical traumas in conjunction with medical human subject trials, like the Tuskegee Experiment. Language barriers are another concern, which is why Byrne goes on to say that the participants’ first languages are also taken into consideration when volunteers are recruited through ResearchMatch.
The Big Idea
Avoid taking the easy path. Griffin warns against “convenience sampling.” She said it’s easiest for researchers to use undergraduate students for their participant pools rather than to look for a set that most resembles the greater, local community. “If your research concerns the general population and the participants in your study are essentially all 18-year old students from your campus,” said Griffin, “you’re not going to achieve a representative sample.”
“When researchers include people from various racial, ethnic, and identity backgrounds in health studies,” said Byrne, “we can be more confident that the results of the studies will apply to everyone!”